Pages

Saturday, September 20, 2014

This warm September afternoon, Joy was playing on the computer. She's come a long way from the "click and pull" revelation of January-before-last, to the point that she navigates all over the place, very competently. Sometimes she even likes the navigating better than the content at any given page!

I was working on my laptop nearby, but not quite paying enough attention to notice that there was some ball-point pen usage going on in addition to the computer games. When it was time to go upstairs, suddenly I noticed that Joy had scribbled all over one of her shorts-clad legs.

Since I haven't been in blogging mode and don't post much about Joy on Facebook, taking a photo didn't cross my mind. Instead my thoughts went immediately to strategies for cleaning up, given that I hadn't planned a bath for this evening. I was inordinately proud at my success in making clean-up an interactive game on the couch, scrubbing with a wipe and then waiting for Joy to prompt me to scrub again.

It wasn't till the pen-marks were all gone that it hit me.

Could I remember one single time where Joy had picked up a pen and drawn something, ANYTHING, on her own with no prompting from a parent or sister or anyone?

No, I couldn't. Not other than iPad drawing games. I asked JoyDad, he couldn't either.

Her very first unprompted pen-and-ink drawing... and I had effaced it almost immediately, with not so much as a photo for the record.

Art is fleeting.

=====

(As I'm typing this, I look up at the computer where she's game-playing again... and it's a "Peg & Cat" drawing program.)

Friday, June 6, 2014

Long time no post -- life is busy, mostly in good ways. Joy is ten years old now, and almost done with her third grade year.

I've been posting FB-sized bits and pieces on the Elvis Sightings Facebook page, but every once in a while a tidbit comes up that just cries out for a blog post.

Like Joy's video choice-making.

Two years ago, I posted about how Joy was making video choices via the ProLoQuo program on her iPad. We'd taken photos of a bunch of her video boxes to put into the program, and she could choose by tapping the resulting photo icons.

Well, we've moved to the point where she's got a little more direct independence than that. She now has access to the video shelves directly, so she can look at all the videos and pick one off the shelf. She still has to bring it to another family member to get it started, but the intermediate ProLoQuo step has disappeared (and she can now verbalize "I want vid-ee-oh PLEASE!")

Even back when she was choosing with ProLoQuo, though, she'd inspect the video box, flipping it to the back cover to inspect the little stills on the back -- most of the video-box-backs have two or three screenshots like the white-bordered ones below.

Then after examining to her satisfaction, she'd give one of the screenshots a decisive finger-bop before handing the box over to get her video.

I don't know why it took me till now to figure out...

that she's generalizing the ProLoQuo/PECs icon selection to the physical video box!

Sunday, August 25, 2013

It's been another summer of Harry Potter in the Joy household. First one was Mama's Harry Potter summer a couple of years ago, when I decided that I really needed to be able to tap into this cultural phenomenon -- and got totally sucked in, to the point of inhaling all seven books in something like six weeks. This summer, it's Rose's turn, and I get to re-experience it. She's been reading, I've been reading aloud to her, and we're halfway through the movies too.

For Joy, meanwhile, it's been another summer of the iPad. She's been making great strides, mastering new apps and various parts of old apps that used to stymie her. We've even been able to download Angry Birds again! First time around, she insisted on catapulting the birds from right to left (i.e. off the screen in the wrong direction) and then getting very frustrated, to the point that we had to remove it from the iPad. This time, she's flinging them correctly, and has even figured out that with some of the birds, you get the most out of them by tapping again in flight.

Joy loves her iPad so, she'd probably play with it all day if she could. But not only won't it hold a charge that long, she needs to do other things as well! So we try to distract her, get her thinking about different things, tell her the iPad is "resting" while it re-charges. We need to be careful, though. If she's been distracted, and we accidentally say "iPad" aloud, she'll be reminded and start anew her "I want my iPad please" campaign. (Indeed, she does say that phrase, complete with "please" both verbal and ASL. YES!)

So we've found alternate ways to not-say iPad. "The device," we'll say. Or, with a literary twist on "He who shall not be named" in the Harry Potter books, we'll call it "the Voldemort."

Ah, but Joy is a clever and motivated young lady when it comes to the device-which-shall-not-be-named.

Yesterday Rose and I were having a Harry Potter read-aloud session in Joy's presence, as she played with non-iPad toys.

Sunday, May 12, 2013

It's Mother's Day, and Facebook is full of photos and memories and memories-in-the-making and tributes to amazing mothers and radical mothers and those whose families are not bounded by traditional concepts of family.

Lots of tangled emotion around this day.

I was thrilled to find the below piece of artwork in Joy's backpack on Friday!

This quote says a great deal about how things are with Joy's educational journey this year.

First - that she has incredibly dedicated teachers, turning theory into practice into PRICELESS

Second - that PRICELESS takes an awful lot of work, theory, support.

Third - that we've come a long, long way.

Fourth - that there's rather a long way yet ahead of us.

I learned even more about the artwork in an e-mail exchange when I wrote an e-mail with a thank-you and a couple more questions. (What, these lazy union-thug-teacher-types actually answer e-mail over a weekend? Why, um, as a matter of fact -- yes, yes they do.)

The passion for [Joy]’s watercolor originated from the tulips she and her class planted last Fall in the front of the school. Now you’ll take note they were in splendid bloom last week and we went outside to observe, write, and paint. Two classmates and [Joy] and I settled in at the horseshoe table where first we watched then I offered her choices of color which increased her attention to task. No kidding with little hand over hand you got a lovely swoop and motion piece of art. ... [JoyMama], I am blown away daily when she initiates or comes to her learning table so naturally.

So much to be thankful for. So very, very much.

And yet, yesterday I was not in a very good place. I found myself wistful about the little plastic stand in which the artwork had been lovingly placed. The backpack had been tossed around quite a bit, without Mama knowing that it contained anything so precious -- and by the time I opened it, the stand was broken into three pieces, not harming the art but not possible to repair.

Many second-graders, with such a treasure for Mama in the backpack, would be brimming over with the delight of the gift they were about to bestow. We'd have been digging in the backpack before we even left the school yard, or maybe refusing to let the backpack open, carrying it home like the crown jewels and teasing Mama about the secret.

Did Joy even know that the art was in her pack? Did she know it was for Mama? Did she remember that it had been in a plastic holder before? Did it bother her that now it wasn't?

There was another bit of the e-mail that rocked my boat too:

Your other treasure, the pencil topper as well was completed with her Buddies.

Pencil topper? What pencil topper? I didn't know anything about a pencil topper.

I had to go back to the backpack and look -- and fortunately there it was, in the take-home folder that I'd failed to open in my mixed delight and angst about the beautiful painting and the shards of plastic. (The stem of the flower is a pencil.)

This time, I found myself wistful that I'd missed it on the first round, and once again missing the component that would have involved the excitement of Joy presenting her creation to me. All the overt excitement had to come from my end -- "Prompt + Model" -- sigh.

Two things helped pull me back out of the wistful place. Two things from Facebook, as a matter of fact.

Often the child who made her a mother can’t understand a holiday, can’t carry a tray to give her breakfast in bed and won’t be bringing her a bunch of violets or a card made all by himself. These moms celebrate their day with their different child in a different way.

And celebrate they do. They find joy in the knowledge that they are nurturing a child’s spirit as well as her health. They take satisfaction in knowing that each accomplishment, however small it may look to others, is a major victory. Each of her child’s achievements is at least partly her own. She knows the value of her efforts and the importance of keeping a positive attitude and counting the blessings of every day.

So many things to celebrate. SO many things to celebrate. So MANY things to celebrate. So many things to CELEBRATE!

The other was a video-setting of a speech made at Kenyon College in 2005. The title on the video is perhaps a little breathless ("The Earth-Shatteringly Amazing Speech That’ll Change The Way You Think About Adulthood"), but the content is a powerful reminder of the importance of choosing one's emphasis, choosing one's attitude. A reminder that it's all too easy to let annoyance and pessimism be the default path of least resistance -- when the more aware, the more educated path involves a deliberate self-reminding of that which is sacred in the most mundane.

Usually I do a pretty good job of reminding myself, but this weekend I did need the reminder.

And this, here... this is sacred, and actually not mundane in the slightest!

Tuesday, April 2, 2013

Thanks to TJ Mertz for alerting me to this image --and congratulations to TJ on his election to the school board!

I've been Elvis-Sighting blogging since mid-2008.

The United Nations first celebrated April 2 as World Autism Awareness Day in 2008. This April makes five years of Autism Awareness Day/Month that I've blogged through -- and mostly ignored. Flipping back through all those Aprils, I've not once used the phrase "Light It Up Blue" for autism.

It's not that I'm opposed to autism awareness. By all means, let's be aware!

But let's not be scared, or scare-mongers. And let's be aware of what people on the autism spectrum are saying about themselves, their lives, and what would make this world a better place. (Hint: there aren't a lot of light-it-up-blue fans on the spectrum.) And let's not get stuck in awareness as the be-all and end-all.

There are changes in the wind, when it comes to Autism Awareness / Autism Acceptance.

IT'S NATIONAL AUTISM AWARENESS MONTH! Please help share our message far and wide this April. We must begin to change the national discussion on autism and other developmental disabilities to full acceptance, value and dignity for all who live with autism.

Now is the time to work for a more inclusive society, highlight the talents of affected people and ensure opportunities for them to realize their potential...

Let us continue to work hand-in-hand with persons with autism spectrum disorders, helping them to cultivate their strengths while addressing the challenges they face so they can lead the productive lives that are their birthright.

Saturday, March 23, 2013

"A burden," Wisconsin state representative Dan LeMahieu (R-Cascade) called my daughter, speaking before a gathering of school board members and public school administrators in Madison last week. "A burden on our schools."

OK, he wasn't singling out Joy as an individual. He was talking about students with special needs in general, you understand. But especially the more disabled ones, the more expensive ones. Speaking in Joy's own school district, about students with extra challenges... so yes, in a very real way, he did refer to my daughter as a burden.

Rep. LeMahieu probably didn't know it, but his choice of words has a long and dishonorable history when it come to people with developmental disabilities. Consider the words of Samuel G. Howe, 165 years ago, speaking in 1848 before the Massachusetts legislature on the subject of people with developmental challenges (emphasis mine):

This class of person is always a burden upon the public. Persons of this class are idle and often mischievous, and are dead weights upon the material prosperity of the state. They are worse than useless. Every such person is like a Upas tree, that poisons the whole moral atmosphere about him.

At least Mr. Howe was "only" arguing that people with developmental disabilities should be institutionalized apart from the rest of society, thus setting up over a hundred years of segregation and horrible conditions at immense taxpayer expense. At least Howe was "only" recommending putting people away, not putting them to the unspeakable experiments and gas chambers of the concentration camps, where people with disabilities were tortured and slaughtered not a century later.

Speaking of poisoned moral atmosphere -- in the year of my own birth, 1968, some so-called thinkers were still stuck in the same atrocity-level patterns. Here are the words of "ethicist" Joseph Fletcher writing in the Atlantic, arguing that putting to death was an acceptable choice for infants with Down syndrome: "True guilt only arises from an offense against a person, and a Downs is not a person."

Let that one sink in for a little bit...

Forty-some years later, my wonderful daughter is a welcomed and contributing member of her classroom community, together with her delightful and accomplished classmate who has Down syndrome, guaranteed by our country the right to a free and appropriate public education.

"A burden," Rep. LeMahieu called them last week, in the language of those who would have denied these girls their humanity not a generation ago.

Then an orator from the audience took the microphone, a school superintendent from Pulaski, Wisconsin by the name of Mel Lightner.

Dr. Lightner drew applause from the crowd as he spoke truth to power. He identified himself as the parent of a student with special needs, as well as a school administrator. And he reframed the education of students with disabilities in these words:

I do want to make one comment before I get to my question, and I don’t know if the gentleman up there meant this, but you said special education is a burden – that’s what he said, is a burden to school districts.

Actually it’s an obligation, a responsibility, and it’s an HONOR to educate children with exceptional educational needs or special needs.

As the applause swelled, Dr. Lightner moved to his next point, to take on and expose the special needs vouchers, a harmful ALEC proposal that was blocked in Wisconsin last year. Unfortunately this year it's been slipped into the 2013-2015 state budget where it's even harder to kill, greased with barrels-full of out-of-state campaign cash.

You should listen to the audio clip itself to hear the scorn drip from Dr. Lightner's words as he speaks of the special needs "scholarships," as they're called in the budget, as he tears apart the manufactured demand for this proposal that did NOT originate in the communities of Wisconsin. Here is the transcript:

By the way, my name is Dr. Mel Lightner, I’ve been a school superintendent for twenty years in the state of Wisconsin – and I am alarmed and shamed at the movement to privatize and de-fund public education. I think that’s the national movement, and at least two of the people up there are part of that movement in my eyes. Kudos to [Sen.] Jennifer [Shilling, also of the panel], who’s a strong advocate for our children.

Ladies and gentlemen, we are at the crossroads in the state of Wisconsin. And I want to get back to the special education issue, because I have a special needs child. Here’s my question. My question is this: Special education “scholarships” or vouchers, private school vouchers, we have a mass of Wisconsinites who have come to you and said “LET’S DO THIS”?!?

I don’t see it. I don’t see it in my community, I don’t see it in the state, I don’t think you’re being responsive to the Wisconsin people. You’re part of a national movement that is hunkered down and coming through with massive private dollars. I think that’s where you are, and my question is: Is that not the case? [Applause]

I wish that I could tell you that Rep. LeMahieu and his fellow panelist from the Joint Finance Committee, Sen. Alberta Darling (R-River Hills) saw the light and were swayed by Dr. Lightner's words. Alas, this was not to be.

Senator Darling didn't address the source of the voucher legislation, responding with rote talking points about "choice." Even worse, Rep. LeMahieu defended his use of the word "burden." He didn't really mean "burden," you understand, it's just that special needs students cost more, which makes them a financial... well, BURDEN! He kept using that word, over and over, just like his counterparts in shameful years gone by.

It's not a burden, Rep. LeMahieu.

These are our children. And in the words of Dr. Mel Lightner of Pulaski:

Elvis Sightings?

The term "Elvis Sightings" comes from the book Unstrange Minds: Remapping the World of Autism by Roy Richard Grinker. It's a one-time utterance or action that comes surprisingly out of nowhere, and then disappears again. For example, one day Joy very clearly echoed "Happy Holidays!" from her Baby Einstein video -- words that we'd never heard from her before, and have never heard since.

E-mail JoyMama:ElvisSightings [AT] gmail [DOT] com

"Like" Elvis Sightings on Facebook!

Introducing Joy

This blog is all about my daughter Joy, age 8, a cheerful dynamo of a girl, and her adventures in context of a slew of diagnoses: Linear Nevus Sebaceous Syndrome, epilepsy, autism. Welcome family & friends, and friends not-yet-met!

Comments Policy

I so appreciate your comments, even the ones that disagree with me -- as long as everyone plays nice. I don't pre-moderate comments (so far), but do use my judgment in deleting comments that carry disrespect, name-calling and/or unsolicited product-shilling. Thanks in advance for helping make Elvis Sightings a pleasant place to be!